Introduce our patients to mentors

A resident once offered me this piece of advice: Find mentors whom you admire. Not just for their rapport with patients, but also for their lifestyle, their hours and their family life. Make goals that you know to be realistic because someone has already accomplished them.

My question now: Why stop there? Why not share that ounce of brilliant advice with our patients? Why don’t we link older, successful patients with diabetes with diabetic patients in their early twenties? How could it benefit their care to see that turning sixty is not necessarily a harbinger of heart disease and dialysis? The statistics are out there, in our exam rooms and on the Internet; we can recite the incidence of blindness and kidney failure repeatedly to our young patients. I argue that introducing them to a person who has controlled their blood sugars and managed a healthy and fulfilling life is a far more powerful motivator than fear alone.

As a student, I cannot help but wonder if inspiring resilience in patients whose diseases I may never live with is forever beyond the scope of my skills. Fortunately, this specific skill may not be something I, as a physician, will need to provide to every patient to give him or her the best care, as long as I utilize tools that are better qualified to address this need. Sites like Crohnology, PatientsLikeMe, DiabetesMine and the afternoon nap society all exist on the Web to bring together patients with similar illnesses to illuminate a shared experience. As our population ages and more and more of our patients have an online presence, these online patient networks may become an increasingly valuable resource.

Consider the positive impact of asking if our chronic disease patients are networking with other patients and of knowing good resources to which we can direct them. Not only does this acknowledge a place for patients on the provider side of the team, but it also allows patients the opportunity to function at the top of their skill set. Who is a better professor of resilience than someone daily tasked with the challenges that accompany physical illness?

At my most skeptical, I can’t help but wonder if we as providers think it a useful practice to employ scare tactics as our first-line method to motivate patients. That somehow, if we abolish the constant stream of fearful statistics from the narrative of their illness, they might actually do worse. And yet, somewhat ironically, we have also come to accept that mental illness and chronic illness go hand-in-hand.

I had the recent pleasure of sitting quietly in an audience of a panel of patients with diabetes, some of whom had lived with their disease for more than fifty years. I was most struck by one panel member in particular: He was an older gentleman who worked as an attorney in an office near Portland. He wore a veteran pin proudly on his blazer. His white beard was trimmed and his posture was straight when he stood to shake my hand at the end of the discussion. He was jovial and swatted away grievances voiced by the other panel members with a hand wave and a smile. He was notable for being the only member on the panel with an amputated leg, a comorbidity most patients with diabetes are taught to live their lives avoiding, even dreading.

“But,” he admitted, “that leg was a damn nuisance anyhow, at least near the end. They don’t take the legs that still work.” He winked.

As a patient with diabetes for nearly fifteen years myself, I found his outlook to be almost scandalous. I have spent much of my experience with diabetes terrified of comorbidities that may or may not arise, and yet here was a man just living his life one day at a time, which in the case of chronic illness is often all I can do. His optimism was — and is — an essential part of my diabetes management. Not at all because it was a cue to lessen the amount of attention I choose to give to my care; only that my care may benefit from elements of self-forgiveness and resilience so that I can pursue health in whatever capacity I am able, come what may.

Many chronically ill patients live full lives, but not without suffering. As responsible physicians, should we continue to teach our patients to fear and mourn their loss of function long before it happens? Perhaps it is a kinder practice to link our patients to other patients: successful individuals who lead rich, happy, fulfilling lives, who have been enriched and deepened by life’s challenges, medical or otherwise.

I think it would be a much kinder practice to introduce our patients to what resilience looks like.

Physician Coaching by KevinMD

Introduce our patients to mentors 5 comments

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maggiebea

Connecting patients with a mentor and a support group can work wonderfully well. In my own limited experience, I’ve seen patients with newly-diagnosed breast cancer receiving visits from women with decades old mastectomies; patients with amputated limbs visited by amputees of long standing (pun intended), demonstrating that life goes on after losing a leg or a hand; and patients with new spinal cord injuries mentored by patients who have been leading full lives even while significantly paralyzed. In each of these cases, often the experienced person knows far more about available tools and support than the treating physician, whose focus is often on the acute stages rather than the long-term chronic condition.

Dr. Cap

This is something I’m trying to develop for our recently diagnosed breast cancer patients as part of the survivorship package — team them up with a “big sister” who can be there for them through the ordeal, almost like an AA sponsor!

Support groups are so 1990s. They are poorly attended in my experience, and the women I have proposed this idea to are drawn to the idea, rather than sitting in a circle of folding chairs…. They need to see that there is life to be lived after cancer!

Lisa

As a breast cancer patient, the last thing I want is my doctor to paid me up with a ‘big sister.’ I would be very suspicious of that big sister; that the purpose is to support the status quo, the doctor’s recommendations, not to help me make decisions about treatment.

I opted out of chemotherapy because the benefit versus risks (for me) were about equal. My oncologist accepted my reasoning, but most women I know with breast cancer didn’t. I heard over and over how you had to be aggressive, how you have to fight cancer. Long complicated story, but I had a bilateral mastectomy, without reconstruction, after it was discovered by my breast cancer was multi-centric. I was pressured to have reconstruction. I received more pressure from other breast cancer patients than my doctors.

Dr. Cap

Thank you for that feedback, Lisa. I was not envisioning the mentors as our agents to sell or reinforce medical decisions for the patients. This could be part of the training for the mentors, and the entire program would be voluntary participation of course.

I’m curious. Do you think your perspective was shaded by feelings about certain physicians? Or their pushback regarding your choices? In other words, if such a program was suggested by a doctor you trusted, would you be more open to participating? I can’t speak for the survivor community that you came in contact with, but I try to avoid paternalism as much as possible. After all, it’s not my body, and the effects of treatment are real and long term.

Lisa

First of all, I am glad you recognize that the effects of treatment are “real and long term.”

I don’t know if I would be interested in a mentoring program offered through by a hospital or doctor. I don’t think my feelings are shaded by my feelings about my doctors, but by my feelings about way breast cancer and breast cancer patients are presented in media. I don’t even like the term ‘survivor;’ I am not sure how I feel about ‘survivorship’ packages or programs. It just seems like marketing to me.

I find that I prefer to use social media. For example, I participate in a fb group for women who are considering opting of reconstruction/didn’t have reconstruction after mastectomy (single or bilateral). I can pose a question about an issue I am having and see how other women have dealt with the same issue. I like the vide variety of opinions. And because the rules are predefined, ie no criticism of other’s choices, I feel comfortable. Btw, I do think social media is a version of the support group.